What's after Rituxan?

My husband has had ITP for about 12 years. Removing his spleen 5 years ago didn't do any good. Steroids don't make a difference. Rituxan has always worked in the past. He tends to relapse every 2-3 years. Normally the Rituxan seems to make a difference after the first treatment (usually they do 8-10 weeks of weekly treatments). So far it isn't working - he is doing his 4th treatment today. Last Wed they did IVIG, on Fri his count was 27k, today it is back down to 11k. (IVIG has never worked in the past but they wanted to try it again.) So what's next? What chemo drug do they try after Rituxan and what are the typical side effects?

In the past Rituxan (and during a relapse of ITP) he's never been particularly tired (except on the actual day of treatment because of the Benadryl infusion) but this time he's been really wiped out each day. So we were always grateful for no Rituxan side effects. I'm really afraid the next chemo drug will have more side effects. (Obviously worth it if it works, but...)

Anyone had to go beyond spleen removal and Rituxan to something else?

Geb:

Other than IVIG, steroids and Rituxan, has he tried anything else? There are still some options. But - Rituxan isn't known to work quickly and if he did have some response after the first treatment in the past, he did better than most people. The average time for response is 4 to 12 weeks after the first infusion. It can take that long to wipe out the B cells that produce anti-platelet antibodies. Also, 8 to 10 treatments is a LOT. It is very unusual to have that many and I'd be afraid of too much exposure to the drug. It's not true chemo, but is a heavy duty treatment. Recent studies show that a lower dose or fewer doses are just as effective. Other studies have shown that Decadron used in combination with Rituxan can have a faster, longer lasting response.

I wouldn't consider any chemo at this point. Vincristine is used sometimes but it doesn't work often and can have permanent side effects. If need be, there are immunosuppressants such as CellCept and Imuran that can work, although not quickly. He could also look into the TPO's such as N-Plate and Promacta. These are newer, platelet production stimulating drugs.

Yes, many people have gone beyond Rituxan and spleen removal.

Thanks Sandi for the info. I've emailed your response to my husband so he can show his doctor/ask about those options. His been doing the Rituxan 8-12 week regimen for about 3 relapses now. (He relapsed immediately after the spleen removal, and now 2 more times since then.) I don't know if he's tried anything else. I worry about immuno-suppressants - he's a pharmacist and around sick people all the time! And, my best friend died from a different immune disorder after being on suppressants because she caught pneumonia and couldn't fight it off.

I completely understand your fear of immunosuppression. I have been on some strong ones myself for both ITP and another autoimmune disorder.

The thing is, being spleenless along with Rituxan is pretty risky too. Using other chemo drugs, such as Vincristine, would be even worse. In this case, you might want to look into the TPO's if Rituxan fails, but I'd give it more time.

Rituxan:

www.pdsa.org/itp-treatments/rituxan.html

www.ncbi.nlm.nih.gov/pubmed/18403395

My 22 year old son had the Rituxan treatment in Feb(4 weeks) and he was holding his platelets between 12,000 and 19,000 for the past 6 weeks, so the Doctor was thinking that this might be his new "norm"(even though to the normal person it is way low). Now today his platelets were only 9000, so he is going in the hospital on Saturday to get WinRoe treatment for 9 hours.

My son is highly upset and sick of ITP and just wants to stop getting treatments and stop going to doctor. He said he feels fine. We told him that he has to go and always needs to be managed with this ITP. He just got a job as a correctional officer and is working his way educationaly and training to be a police officer. He doesnt want this to interfere with his new job what so ever, so he refuses to let this come between his new job and future jobs. But we told him that if he doesnt get his treatments or follows doctor he could end up not getting on the P.D for not following and managing his ITP.

Feel so bad for him, but that is what is next for him, the Winroe